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Graves Disease Information To Share With Family And Friends

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Thyroid Patient Advocacy
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Information for Family and Friends to better help understand what is going on with a Graves Disease patient.

Thyroid imbalances of any kind, but most notably Graves Disease, disturb normal function in every single cell of the body.

One of the aspects most noticeable to others, is its effects on the brain and emotions. Thyroid hormone is now recognized as an essential brain chemical, necessary for proper function of other brain chemicals.

Graves Disease can turn even a mild-mannered person into someone who is often irritable, angry, emotionally unavailable or self-absorbed.

Graves patients don’t necessarily understand that their feelings originate in ‘out-of-whack’ brain chemistry, and sometimes blame others for their fragile emotional state.

It is quite impossible for someone who has never experienced the attack of Graves Disease on the body and brain, to understand how difficult it can be, simply trying to function or get through each day. Relationships and careers can be damaged, sometimes permanently. People tend to view the erratic behavior of the Graves patient as part of their personality, or in terms of character defects. Many people with Graves have had it a long time before it was diagnosed, and a lot of damage may have been done already without anyone having a clue that an illness is even responsible.

These factors contribute to the high divorce rate for people with Graves Disease. Sometimes the patient leaves the marriage, believing the spouse is responsible for everything that’s wrong; and other times the spouse can’t endure the changed or difficult behavior….or lack of normal marital relations…and ends the relationship; perhaps taking it personally, not understanding that the problems are a manifestation of an illness.

To complicate matters, “thyroid problems” are viewed as minor by the general public. Before sensitive tests became available, anyone who was a little heavy and tired may have been told they had a low thyroid condition. The “simple” explanation for thyroid imbalance, refers only to the changes in metabolism of energy.

Many people mistakenly believe that hyperthyroidism is a free ticket to weight loss, rather than a dangerous illness.

True thyroid problems are serious, and can be fatal when untreated. When treated, the journey to wellness is not necessarily fast or smooth. Since every cell and organ in the body is negatively affected, symptoms develop ranging from:

While the body will usually heal in time with proper treatment, permanent heart damage, osteoporosis, and permanent effects on the brain can occur when hyperthyroidism is left untreated too long. Extremely high levels of thyroid hormone can lead to thyroid storm, which is a medical emergency requiring extreme interventions to keep the patient alive.

Symptoms and What’s Involved

Anxiety and depression are also common, and because of the myriad of unexplained physical symptoms, the patient is likely to become focused on health issues. Friends and family probably have no idea what’s involved, why the patient is behaving the way he or she is, or how to deal with it all. The result is that the thyroid patient may be treated as a hypochondriac or as emotionally “weak”, and berated by others or left alone to deal with life, at a time when support from others, is needed most of all. The final whammy is when the spouse, one who has promised to love, honor, and cherish for better or worse etc. can’t understand or be supportive either.

GRAVES-AD1But there can’t possibly be a more difficult task than giving support to a spouse who isn’t necessarily sick in bed, doesn’t look particularly ill, but very likely has stopped functioning in many areas of the marriage. This often includes household duties, parenting, social activities, and perhaps quite possibly, the bedroom, as well. On top of that, how do you support someone who seems irritable or angry much of the time and might not even have any of the positive qualities left, that attracted you in the first place?

It may not be easy, nor will the return to good health probably be as fast as anyone would like. You may already be tired of hearing the word “thyroid”, but if you’re not, you probably will be. It can take months or several years, depending on treatment method and individual response, for thyroid levels to be stabilized and for the healing process to begin; and it could be a few more years before full recovery takes place. It’s possible that some psychological and cognitive effects will remain; especially if hyperthyroidism/Graves was severe or went untreated for a long time.

Suggestions

Learn everything you can about this disease, and recognize that your friend, child, sibling, parent, employee, or partner has a very serious condition. This person may not be able to be who you need for awhile; perhaps even less than with most other serious illnesses, because of the changes in brain function and emotional stability to deal with, on top of the physical illness.

Spouses

This may be one of the greatest challenges your relationship ever faces. She or he may not understand right now that it’s just as difficult for you in many ways as for him or her, but probably will some day. Your understanding and support through this will surely strengthen the bond between you.

It’s important to take care of yourself, too. Spend some time with safe people who can meet some of your needs for stability and friendship that may not be met in your relationship with the Graves patient at this time. Talk to other people who are going through the same things, if possible.

Children

If the Graves patient is responsible for young children, help may be needed in many cases during some of the more difficult phases of the stabilization process. This is one of those times when friends and extended family can be of tremendous aid. If this kind of help isn’t available, child care is an option worth considering.

Patients who are children themselves have a unique set of issues. I’ll need some help before attempting to address all of those here, but school work, friendships, and family relationships are among some of them.

Work

Work performance is usually negatively affected until stabilization of thyroid levels has been achieved for some time. Until then, expect impairments in endurance, productivity, concentration, memory, planning, complex problem solving issues, and interactions with others may be difficult. While most of these problems improve significantly after treatment, a 2000 Dutch study concluded that even after successful treatment, over half of patients experience a continued lack of energy, and that over 1/3 are unable to do the same job they did before the hyperthyroidism.

Communication is Key

If the person with Graves is out of control emotionally, talk to him or her (during a calmer moment) about the effect this is having on you. Make it clear you understand the behavior is caused by the thyroid imbalance. Try to develop a mutually agreeable way for you to protect yourself when the outbursts happen. For some people, it helps to get out of the house for awhile, when necessary.

She or he can work on trying to recognize when the bad spells are coming on and give you warning so you can protect yourself until it passes, but it’s not always possible. I could tell you not to take it personally, but that would be trivializing it. What could be more personal!? It may take some time for you to completely forgive and trust again. Try to remember that this is temporary, and that it’s an illness beyond his or her control.

Eye Disease Issues

Patients with the eye disease may withdraw socially because of self-consciousness about appearance. Protrusion of the eyeballs and lid retraction produce a facial expression that gives erroneous subconscious messages about the person’s emotional state, producing misinterpretations of intent and meaning in interpersonal relations. This may be happening in family relationships as well, whether or not anyone is consciously aware of it. The patient’s self-esteem may be damaged both from the disfigurement of the eye disease and from the changed interactions with others. An awareness of this on your part should help you avoid some of these errors, and help you be more supportive.

More Help

It may be necessary to seek counseling for both spouses, or for the entire family. Try to find someone who is experienced in treating patients and families dealing with chronic illness, especially thyroid imbalances such as Graves or Hashimoto’s Diseases.

**This article was originally featured at TPAUK.org**

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3 Comments

  1. In August 2002, I was diagnosed with diabetes. Then in September of 2002, I was diagnosed with graves disease. I had just started getting used to the fact I was a diabetic and then the wind in my sail was knocked out. It’s been 13 yrs and I’m having problems with my thyroid levels being too high. I ask my doctor if the graves disease could come back since I had my thyroid killed with the treatment to kill the graves disease. He said I had nothing to worry about. It wouldn’t come back. The endocrinologist told me that it could if und r a lot of stree. We’ll I’m stressed out, I have been for about a year now. How can I go over his head and get checked again?

    • Hi Rhonda,

      I cannot imagine what you are feeling. I have my own health struggles. But, you MUST find a new doctor or go over your doctor’s head. Your health depends on it.

      Keep me posted~
      Danna

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